I saw a lonesome forget-me-not gaze up at me the other day,
late in the year for these delicate blue flowers,
but they will always remind me of my mother.
They will forever be linked with the disease that stole her.
The forget-me-not is the poster flower for Alzheimer’s, so when I noticed this little blossom peering up at me, it brought the condition back to my mind, and reminded me that I hadn’t yet read a book loaded up on my Kindle. Maybe it had been too soon when I bought it, Mum passed away at Christmas last year, but sitting in the Dr’s waiting room with Dad the other day I clicked on the book and opened it.
Instead of bringing tears, which it does too, it brought a smile to my face, many smiles. Finding a kindred spirit can do that. I relate strongly with the author S. R. Karfelt. Her candid humour, outright frankness, and sincerity shone through in her words. Our situations regarding Dementia are different, we’ve been through very different circumstances, but the familiarity of her anecdotes and narrative rang so true.
Alzheimer’s is the thief of time, stealing memories and lives with no compunction at all…and it is on the rise. More and more people are being diagnosed and figures show that 850,000 people lived with dementia in the UK in 2015 and it’s set to rise at a rate that will mean over 1 million in 2025 and 2 million in 2051. I’ve blogged about Prevention and Awareness before, and there are things we can do, changes to our lives, diets, and routines that can help, but this post isn’t about prevention or cure, it’s about living with the disease.
Please remember that living with Alzheimer’s affects a whole plethora of people for every one person diagnosed. Whole families and communities have to come together to care. When someone in your family has dementia, you can’t walk away, you can’t hide, you can’t bury it. The condition sneaks up and robs you of your loved one, but unlike other diseases that leave you to grieve after you lose your cherished family member, dementia leaves the shell of the person with you. I can’t describe the pain that that instils.
In her book, Nobody Told Me: Love in the Time of Dementia, S. R. Karfelt has been through all of this and eloquently puts her experiences on paper. For anyone facing dementia within their family, this is a book that will show you that you’re not alone. You’ll know you are part of a growing number of people dealing with this disease and staring it right in the face with defiance – and humour – you have to laugh, and you’ll cry too. Lots.
So many stories in this book tickled me, made me smile, and made me belly laugh, because I’ve been there. You have to attack Alzheimer’s with humour, wit, and love, they give you the strength to carry on.
When Mum complained of the noisy street party going on in her back yard, outside her house, we had to humour her, because my parents lived in the middle of a field, not a sound anywhere. When she thought I was her mother, I held her close and rocked her. When she was convinced Dad was a doctor, I told her she’d better take her medication with no complaints. When she thought Dad was a stranger who had kidnapped her and was holding her hostage, I talked her through it, tried to allay her fear, and help her calm down.
Can you imagine believing you’re only fourteen, and then finding out you’re married and he’s an old man? Imagine looking in the mirror expecting to see your twenty-five-year-old-self gazing back and instead seeing a seventy-year-old with a very different face? Imagine nurses/carers visiting every day when you don’t think anything is wrong with you at all.
Imagine forgetting how to walk, or how to lift your food from the plate to your mouth with a fork. How would you feel if you couldn’t remember the beginning of the movie you started watching an hour ago? How would you feel when your grandchildren walk in and smile at you, but are complete strangers because you believe you’re twenty, and there are still eight years before you give birth to their mother yet?
Think about being in hospital or a home and not having a clue how you got there, or why, or for how long, or who took you there, or where you are, or why you’re there, or how long you’ll be there, and there’s nothing wrong with you, where are you, how did you get there, there’s nothing wrong, who took you there, when can you go home, as there’s nothing wrong… Where am I?
This is life with Alzheimer’s. It hurts – not only the patient, but the family, and carers, and friends… Alzheimer’s hurts everyone it comes into contact with.
So, if you’re dealing with, living with, coping with Alzheimer’s please know that you’re not alone. Please laugh as much as you cry. I’ve told my children that if I ever get this disease they are to treat me like normal, but play to it, allow me to stay in the time that I believe I am in, humour me, give me adventures, if I don’t know where I am – make it up!
People will tell you how to cope with this condition when you’re caring for a loved one who doesn’t know who you are, but as long as you are compassionate and loving, you’re doing the right thing. Take time out. Laugh, I cannot say this enough, not at the person sometimes not even with the person, they won’t understand and you don’t want to hurt or alienate them even further, but you need to deal with the mess it makes of your life too, and once you’re out of the immediate situation talk through the absurdity Alzheimer’s proffers you and laugh at it. Irreverence can see you through it all.
Tears will fall, that’s a guarantee, but don’t ever think you’re alone.
The Alzheimer’s Society is an amazing resource who will help you through this minefield, as will those who’ve been there already. Stay strong.
You can buy
Nobody Told Me: Love in the Time of Dementia
by S. R. Karfelt on Amazon UK Kindle, Hardback, and Paperback.
Amazon US Kindle, Hardback, and Paperback, and from your local Amazon and other online bookstores.
Please visit her website for further information and links.